"People sometimes just shock you" (Spinal Muscular Atrophy)

You know sometimes people just shock the heck out of you. Today, Christen was on the phone with Jonathan at Stanford when DR.Wang walked in. Christen's fear as mine was flying with H1N1 being so wide spread , Lizzy not having her booster for the H1N1 until Nov.18 and the bipap issue. So, DR.Wang says he does not want us to fly until its warmer. I guess that is Spring? I was shocked... floored totally taken by surprise. Now, the big question. Is DR.Wang going to let us get the medicine from there even though we did not fly? Med Flight threaten us with being penalized if we canceled this flight. We were sick in March with a bad flu and they just have to understand we are only human. People get sick and things happen.  You have to take precautions with a child with Type 1 SMA. We drove out there in July because of the FAA regulations with the bipap. Jonathan said "DR.Wang is writing a letter to Medflight to help us." I hope it works.  The flight was booked this month with out medflight even asking us if the flight time would be okay. When, Gene was there this would of NEVER happened or have we ever been treated so badly.  This new guy that is just plain mean and cocky that books the flights. He says "He calls all the shots"  We had  7:15 am flight at O'hare 2 1/2 hours from home (when traffic is good) . We would of had to stay up all night to make that flight. I do not want to sound like a whiner....But my gosh people have a heart. I thank God they help us but they have to UNDERSTAND our life is not an easy one and sometimes you need to ask us if we can make a flight before booking us. We need to take precautions for the safety of Elizabeth.


On good note I have a shocker to tell. Lizzy is having a benefit to help us with out of pocket medical expenses, travel and other things Lizzy needs in Jan.
Elizabeth's dad's Grandmother and her friends from the Moose decided to do one for Lizzy.  My emotions are still taking over and tears are once again today flowing from my face when I heard this.  The funny thing is they got a local biker club to donate their club house and open bar for the event. I am still in shock. Bikers and a bunch or elderly ladies coming together to help Lizzy!! Visualize this in your head. My Gosh.  Lizzy has touched so many lives and so many people are good to us because of her. Elizabeth's Dad immediate family does not have anything to do with Elizabeth but his Grandmother has for the past 4 years after she found out about Lizzy. She is a great lady with a heart of gold. 
Christen went to Prompt care tonight and has ear infection, Bronchitis and allergies. So, its not viral but I am still treating it as such. Add her to your prayers,

Many prayers to our friends Kaitlyn, Drew,MJ and all those sick people with H1N1.

Thank you for keeping us in your prayers!!

"We believe in miracles because we live with one."
www.our-sma-angels.com/elizabeth